Rag and Bone Shop of the Heart

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I walked into my doctor’s office and stood staring, gobsmacked, at this book on the table. Did someone publish my blog? How did my doctor find it? I’ve used his line for so long, I almost forgot it belonged to W.B. Yeats. Of all the lines of all the poems on all the books in all the doctors’ offices in the world, mine had this one on her desk? Kinda spooky. I’m taking it as a good omen. I’m taking it as a sign that I should stick with her even though she doesn’t accept insurance and I feel like I’ll go bankrupt with long-term care. Signs from the universe go a long way in keeping me hopeful.

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When I was a child–somewhere around 10 or 11–I used to carry a book of Yeats poetry around with me. I have a memory of sitting upstairs at the back of a bus (Dublin buses were double-deckers) nose stuck in this 1965 edition (my name is written in shaky kid letters on the edge of the pages, the way you do when you bend the book one way to get the first name and then the other way to get the last name), but mostly I know I did this because, over the years, my mother has fondly mentioned this odd obsession. Yeats is still one of my favourite poets and, when I started this blog, I took one of the lines that always stayed with me (because I was a dark young thing), the last line of this poem:

The Circus Animals’ Desertion
BY WILLIAM BUTLER YEATS

I sought a theme and sought for it in vain,
I sought it daily for six weeks or so.
Maybe at last being but a broken man
I must be satisfied with my heart, although
Winter and summer till old age began
My circus animals were all on show,
Those stilted boys, that burnished chariot,
Lion and woman and the Lord knows what.
II
What can I but enumerate old themes,
First that sea-rider Oisin led by the nose
Through three enchanted islands, allegorical dreams,
Vain gaiety, vain battle, vain repose,
Themes of the embittered heart, or so it seems,
That might adorn old songs or courtly shows;
But what cared I that set him on to ride,
I, starved for the bosom of his fairy bride.
And then a counter-truth filled out its play,
`The Countess Cathleen’ was the name I gave it,
She, pity-crazed, had given her soul away
But masterful Heaven had intervened to save it.
I thought my dear must her own soul destroy
So did fanaticism and hate enslave it,
And this brought forth a dream and soon enough
This dream itself had all my thought and love.
And when the Fool and Blind Man stole the bread
Cuchulain fought the ungovernable sea;
Heart mysteries there, and yet when all is said
It was the dream itself enchanted me:
Character isolated by a deed
To engross the present and dominate memory.
Players and painted stage took all my love
And not those things that they were emblems of.
III
Those masterful images because complete
Grew in pure mind but out of what began?
A mound of refuse or the sweepings of a street,
Old kettles, old bottles, and a broken can,
Old iron, old bones, old rags, that raving slut
Who keeps the till. Now that my ladder’s gone
I must lie down where all the ladders start
In the foul rag and bone shop of the heart.

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Not a cheery post.

I wish I had the ability to write because I have so much I don’t want to forget. I’ve taken quite a nosedive this last month and I’m feeling pretty hopeless and sad. I have many new symptoms and I’m still trying to contend with the old.

Most recently, my jaw has been injured by my apnea oral device. It feels partially dislocated in the mornings and the pain is truly excruciating– from my lower jaw all the way up to my skull above my right temple. Talking is painful, eating is painful. I’m fearful that I will cause permanent damage (or have already). This is in no way trivial. One of the only things I’ve been able to identify that helps my illness is the CPAP and oral device, when I can actually sleep while using them. I’ve tried to go back to the CPAP to give my jaw a break, but it wakes me up incessantly throughout the night and makes me feel worse than if I didn’t sleep at all. Sleep is the key to my healing. There’s nothing that will take me down quicker than lack of sleep or poor sleep and the apnea is no joke. My only option is to wear the CPAP and take a medication to knock me out. This… I don’t know, I can’t even articulate how despairing this makes me feel. I can’t tolerate any drugs. There’s not one I have tried for sleep that doesn’t either cause an allergic reaction or make me feel much worse. Having to deal with the CPAP–the washing every day, the tight strap around my already-injured neck, the rash and acne on my face, the blowing my gut up with air, the endless awakenings–I am so upset about having to go back to this. Plus, trialling sleep meds when my sleep had gotten better! I don’t want to be on more prescriptions and I can’t afford to be. So, because of my jaw, a cascade of pain, energy-depletion and lack of sleep. And I think I might have to see a new doctor about my TMJ, which I need like I need a hole in my head. Or a new jaw injury.

My gut problems have gotten worse, if that was possible. I’m permanently inflamed and don’t digest well, even with HCL and enzymes. I now have to do an enema every other day or so. Another thing for which I have to find time and energy. And the more downhill I go, the more I fear a day in the future when my husband has to help with this. Don’t even read that. It’s too gross and unbearable to think about. The only plus side of this situation is I’m very thankful for the detox help that enemas provide. Much better than being constipated.

Sleep, pain, headaches and exhaustion have been worse this last month. I’ve had no appetite, but have actually gained weight. The muscle pain and stiffness more than anything upsets me. I can’t go back to the pain I had in 2012; it was all-encompassing. It stops me from moving as much, talking as much or being in any way a pleasant person to be around. I can really topple quickly.

I started seeing a pelvic floor physical therapist who helped me more in the first appointment than the fancy GI specialist did with two appointments and two invasive tests. Of course, I’m only allowed twenty-five PT/OT/MT visits per year and I’ve already used twenty-two. And with Medicare, I’ll have zero. The thought of being without my strain-counterstrain PT is very disheartening. I haven’t seen him in a month and I know this is contributing to my worsening pain. He’s $150/hour without insurance.

I kind of scrapped everything I was doing with diet in order to try to fix my gut issues which started on the Autoimmune Protocol (AIP) last year, but nothing has helped. Which, of course, makes me want to consider eliminating foods all over again. Gut isn’t better and I’m going downhill, so maybe the new additions caused it? Or maybe the new probiotics. Or the Florinef. Or the emotional time I’ve had recently. Or the ups and downs of the weather. Or or or…

Almost every single day, I have an awful interaction with someone in the healthcare field. It is brutal and demoralizing. I just hung up in tears after talking to a clinic’s billing person who argued every point I made. Anger wrecks me and people just don’t want to help, so I’m reduced to weeping. I said to her, “Am I asking something out of the norm? You seem very annoyed.” They charge $150 for a half hour phone appointment, $300 for 45 minutes, so what choice do I have than to go in to see doctors and have to deal with insurance and billing?

Yesterday, I was almost in tears because my endocrinologist’s nurse was incredibly rude for the umpteenth time and for no good reason. Because I’m trying to figure out if the doctor can give me info over the phone rather than in person, because I’m trying to figure out how I’m going to get from the office to the lab for a blood draw when it is in a different building on the hospital campus, because I need to research growth hormone stimulation tests before I agree to it, because I didn’t want contrast with my MRI and they made a mistake and put the wrong order in…. These people are in charge of my care, I need them, but they battle every question. Endless phone calls about two things: money and protecting myself.

Well, this has been a cheery post. I kind of hope nobody reads this rant, but I’m going to publish it anyway.

June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

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But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.

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Sleep Study

Last Friday, I had my third sleep study in as many years. This one was to see if my oral appliance was helping my sleep apnea. I’m a pro at these studies by now, but it’s still an awful night’s sleep, no matter what. Check in is at 9pm and they wake you up between 5:45am and 6am the next day. My sleep has been a lot better in recent months, but it’s also gotten later and later. I haven’t gone to sleep before 2am once this year. I haven’t tried to change this because I don’t want to mess with whatever is working about my sleep. For example, last night I slept from 2am to 10am. My sleep is still fraught with problems and awakenings, but actually having my eyes closed for 8 hours is miraculous.

So, I knew I was in for a rough night during the sleep study. This time around, I wore my pajamas to the clinic since I would just be getting straight into bed; I brought melatonin, since I knew I’d be trying to sleep earlier than usual; I brought an electric blanket since it’s always cold (stroke of genius, it turns out, because I have a very hard time sleeping with icy feet); I brought both of my pillows (one for my head, one to support my legs when I sleep on my side); I brought water and snacks (didn’t need the latter); and, most importantly, I brought ear plugs. During my last sleep study, I was woken by the crackling of the speakers, the water in the pipes, the hissing of the air conditioning, the closing of doors in other rooms… Ev.eRy.Thing woke me. I can say, without any shadow of doubt, that finding ear plugs that block all sound and are comfortable enough to sleep in (i.e: NOT the $100 custom-fit hard ones) was the best thing to ever happen in my health life. The key was, my husband had to teach me how to put them in properly. I didn’t realise there is an art to this. Silence is pure bliss, even if it’s filled with various pitches of shrieking tinnitus.

Another trick I had learned from experience was to shower (and not put on any lotion) right before coming to the sleep study, so the sticky pads would stay stuck through all my nocturnal thrashing. In the past, the tech had had to wake me to restick sensors that I’d ripped off. It was also a pleasant surprise that the huge brick that connected all the wires, which used to be strapped to my stomach, has been eliminated.

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Once I was all hooked up to the wires and monitors, I read for a bit and then tried to go to sleep at around midnight. I had to call the tech in twice: once to move the massive cord of tethered wires coming from my head and gathered together at the back of my neck like the brain plug-ins in The Matrix — that’s a design flaw when they want you to stay on your back — and another time because of the bright green speaker light reflecting off the ceiling and blaring through my shut eyelids. She got on a chair and threw a washcloth over the speaker light. Can’t believe no one else had ever complained about it.

My night was terrible. It felt like I was awake the whole time and I remember at one stage thinking I just needed to call the tech in and tell her I was going home because I obviously was never going to fall asleep for more than a few minutes at a time. Turns out, I was wrong about that. I did sleep, but spent an inordinate amount of time in stage 2 sleep, during which, my doctor said, you can be slightly aware of your surroundings. Was I ever. I also remembered snippets of about 5 dreams. It felt like I would doze for 10 minutes, have a dream, wake up and lie there thinking about it for an hour, before dozing off and having it happen again, over and over. Dr. M confirmed that I did wake up after every REM cycle, but said this wasn’t that uncommon. We surmised that my problem is, because I’m often having stressful dreams and nightmares, when I wake up it isn’t a slight surfacing and then back under, it is, instead, a fully awake, heart-pounding episode that I have to come down from. He said my “sleep architecture” was terrible (how I progress through sleep) and my brainwaves showed that I spent most of my time in flight or fight mode. I’m hoping this was exacerbated by being hard-wired into a foreign bed. I’ve done so much bloody work over the years trying to calm my nervous system and feel like I’ve made progress. The ear plugs are a good example — I spent years not even considering wearing them because then I wouldn’t be able to hear the intruder/dog whining/crackling of flames or any one of the other million crises that can strike in the night. I’m not on high alert anymore. Usually.

The biggest revelation to me that night was how much pain I am in when I’m sleeping. I thought I was just an extremely active sleeper but, just like my experience during the tilt table test when I was forced to lie on my back and stay in one position, all hell breaks loose in my limbs when I can’t move. Blood pooling, pins and needles, numbness, cramping, sore muscles and, worst of all, skeletal pain — deep aching in my joints and bones. I had to move to alleviate the pain and get my blood flowing, so, as much as I tried to stay on my back (where the apnea is a real problem), I wound up flipping from side to side, just like I do at home. I’d never equated the tilt table test to sleeping — while I was supine, there was no blood in my extremities at all and they went from numb to excruciating. I was almost in tears. I don’t know what to do about this particular problem, though. It’s not a painkiller issue. I think I need stronger muscles to help the bone and joint pain and, for the circulation issues… what? Would Florinef or Midodrine help with this? Can I just hire a gaggle of elves to rub my arms and legs all night long?

Anyway, there is some great news. I managed 3 short cycles of deep sleep during the night, which blows my mind when I didn’t think I’d slept at all. My oxygen saturation was 96-97% (that’s good). And… sound the trumpets… I had ZERO apneas or other breathing events. Picture me kissing my ResMed Narval oral appliance like Jimmy Stewart kissing the newel post knob in It’s a Wonderful Life. Mmuah mmuah mmuah! I love you, my uncomfortable little OA. I’ll never speak ill of you again. Even though you destroy my jaw every night, you are a much better friend than the CPAP mask.

So, with ear plugs and the OA, I’ve tackled 2 of my sleep issues. Now, I just have to work on the hypersensitive nervous system, temperature dysregulation, cervical spine injury, the night terrors, muscle aches, bone pain, joint bursitis, blood pooling, photosensitivity, intermittent drenching night sweats and the awful mast cell poisoning reaction events and I’ll sleep like a baby. Yay!

But, seriously, this is really good news. Sleep is absolutely the key to my healing. Oh, and Dr. M prescribed a newish sleep drug called Belsomra, which works on brain neurotransmitters. I think I might give it a try. 🙂

March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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Doctors, Tests and Direction.

So, the MD that my husband and I have seen since 2007 has left her practice abruptly and I’m quite sad because we had a great relationship and mutual respect. She trusted me and would run tests that I requested if I had good reasons. She also knew me before I was sick and that was very important to me. She knew me when I was bouncing off the walls with energy and happy. She saw me a week before ME hit for a check up and I told her my only problem was sore muscles which I attributed to sitting at a desk after so many years walking the floors of restaurants. She witnessed the abrupt change in my abilities when all the other doctors I’ve seen have nothing to compare my current level of health to.

Now my two doctors are naturopaths: Dr. Erin and Dr. Kim. I had follow-ups with both of them in the last 10 days. Dr. Erin has put me on 25 mg of DHEA and progesterone. They’re topical, compounded only with coconut oil, nothing else. She’s hoping these will feed down both pathways to raise all the other hormones that are low.

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And by “pathways”, I mean, instead of giving me just Pregnenolone (at the top of the “map”) and letting my body do with it what it wants, the DHEA and progesterone insure that (in theory) I’m feeding all branches of hormone production:

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My thyroid hormones continue to be low, even though I almost doubled my dose a few months ago, so I’m changing to compounded T3 and T4. Dr. Erin doesn’t want me to try NDT (natural desiccated thyroid from pigs) because I’m so reactive right now, but she’s hoping compounded meds without the crappy gluten- and dairy-derived fillers will help me absorb the hormones better. I’m really nervous about the change because I’ve taken the same generic pills every morning for 6 years — well before I got sick.

My salivary cortisol test showed high levels throughout the whole day, especially at night. However, Dr. Erin said she thought functionally I was still low, her theory being that my body is compensating for something and that cortisol is either being converted to a less active form or receptors are down-regulated, which results in my body needing to produce more to get the same results. She also wants me to start humic acid (for chronic infections) and a homeopathic lotion to rub into my sternum which can supposedly desensitise my body and help reactivity. Not sure how much faith I have in homeopathy, but there’s no harm in it, other than the cost. I’ve also been told to start daily “hydrotherapy” (basically, hot and cold towels to boost immune function) and oiling my body to absorb additional fat (some serious old wives’ shit going on here).

Dr. Kim ran a bunch of blood tests. The good news is my CBC, metabolic panel, folate, iron and vitamin D are all within normal range (the latter two I would like to be higher). The bad news is, total immunoglobulin and all 4 subclasses are even lower than they were when Dr. Chia tested them. I also had high levels of Mycoplasma Pneumoniae IgG, HHV6 IgG (which I already knew) and she said I was “dripping in EBV.” Gross.

The final blow was candida is high. Those who know me, know I have dreaded the day I was tested for candida and purposely didn’t bring it up with the last 30 doctors because I don’t want to face my sugar addiction. Dr. Kim isn’t insisting I go on a strict no-sugar diet, god love her, because I think she recognises my need for the joy it provides and, really, I try to be responsible — a bit of dark chocolate, ice cream, some honey, jam, fruit, dates… It’s not like the good ol’ days where I could eat a Dairy Queen Blizzard or a whole purple Yorkie without thinking twice. She is putting me on a prescription anti-fungal, Nystatin, a pulsed dose — 4 days on, 3 days off.

I am waiting to hear from insurance about sub-cutaneous IgG (because I’m too scared to start with IVIG) and, in the meantime, I am starting to supplement copper, low dose B-complex, additional B6 and B1, increasing Thorne Trace Minerals to twice a day and magnesium glycinate to 4 times a day, as well as homemade electrolyte water all day long.

I’m hoping and praying that I will feel like a different person once my hormones and thyroid are balanced. Then my blood pressure will come up and my brain will work better, headaches will dissipate, my immune system will be able to suppress the infections, sleep will get better, reactions will fade, fatigue will lift and we’ll all live happily ever after!!

My Visit to Dr. Chia

Okay, okay, stop begging, I’ll tell you about my appointment with Dr. Chia. I can’t believe this took me so long to write, but I’ve been plugging away a little bit, day by day. I can save you some time and tell you straight away that it was not worth the trip. I don’t really feel like I learned anything new or found access to treatments I couldn’t have tried without him. That doesn’t mean I regret the trip, it just means, if someone else in my position asked my advice, I would say, “Save your money and your energy.” The journey, for me, became the challenge early on. I wanted to know if I could do it. I wanted to test my boundaries, I wanted to see if I could leave these four walls and find out just how bad the payback would be. It was also about testing a different location, spending time with my mother and giving my husband a break. So, I had a lot of different fuels feeding the engine, if you know what I mean and, without even one, I might not have made the trip. In the end, because I left early and Dr. Chia didn’t really give me anything, it was purely the challenge. And I’ve decided that is enough. It bolstered my confidence and reinforced how resilient I am — we are.

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With my mother outside Dr. Chia’s office.

Here’s what I thought about Dr. Chia before seeing him: I knew his son was sick with ME and recovered. I knew that Dr. Chia believes that enteroviruses are the root cause of this illness and that he has conducted studies that supported his theory, but the rest of the ME research community hasn’t taken up that torch and done bigger, better studies to replicate. I thought he would offer Equilibrant, his Chinese herb formula with which many people have had some success, and he might consider antivirals. My main impetus for seeing him was to get the testing that none of the other 40 doctors I’ve seen has done and also to see whether he thought I was a candidate for antivirals. Of course, I forgot to ask him about antivirals because I forget everything when I’m in a doctor’s office.

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My mother holding the massive binder of test results that we carted down to California and then never opened.

My appointment was at 4:15pm on a Friday, so I was worried about rush hour and LA craziness, but Google maps was accurate and it only took us half an hour to get there. His office is in a nondescript brick building in a sort of strip mall in Torrance, CA. I’m a big fan of Stephen King and liked that the office was in an area named after the possessed protagonist of The Shining. 😉 The waiting room was barren. We (my mother and I) waited about 20 minutes and then went in and had the normal nurse stuff done. I noticed she wrote on my file that I was there about “chronic fatigue” and I mentioned that it was actually ME ~ or even write “CFS”. She said, “Well, it doesn’t matter because he only sees patients with your condition.” Sigh.

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We waited probably about another 15 minutes for Dr. Chia and, when he came in, he was off like a rocket. He did not stop talking for an hour and 15 minutes. After about 10 minutes, he said I could record him, thank god, because I didn’t remember to ask and I have no memory of anything he said in those first few minutes. Dr. Chia was kind and pleasant. Not in any way intimidating or arrogant. I guess I would call him dogmatic without the ego. He seems slightly frustrated that nobody else realises enteroviruses are the root cause of so many chronic illnesses and told us many stories of other patients and studies that support his contention.

A few weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person about my illness, instead, he just ran down the list and discussed how my immune system had collapsed. I couldn’t help thinking none of this needed to be done in person since I was basically just a set of ears, but I know the law says I had to be there in the flesh. He also did a quick physical exam and neurological work up.

Here were his main points about my history:

  • As an infant, my immune system shifted into Th2 dominance with pneumonia and ear infections and asthma, which is an inflammatory disease. Instead of just fighting off infections with an increase in the Th1 branch of the immune system and then resetting back to equilibrium, mine shifted into Th2 and has been continually off kilter my whole life as it got hit by different viruses (bronchitis, ill while traveling in Central America, viral gastroenteritis from lake in Virginia etc. etc.). He gave an example of people who encounter the polio virus: just like the lake in Virginia, only a few out of hundreds exposed to polio will become crippled and the difference is the amount of gammaglobulin I (and others) have and my compromised immune system. He said enteroviruses are the second most common infection after the common cold and that viruses are often transmitted through water. He gave the example of Joseph Melnick at Baylor University who studied viruses that live in water from sewage contamination and spread to humans through shellfish, showers, colds and swimming. He also said the Russians wrote a paper that concluded the most common risk factors for contracting meningitis are swimming (30%), camping (20%), contact with sick people, and drinking well water.
  • Doctors repeatedly prescribed antibiotics for viruses and worsened my situation. The dark circles under my eyes are typical of this.
  • With Th2 dominance, comes allergies.
  • Night sweats are a classic sign of Th2 dominance ~ along with pain and sore throats, they are my immune system trying to fight off the viruses. But, “viruses are like weeds” and replicate exponentially. He said post-exertional malaise happens because activity causes viruses in the muscles to become metabolically active and replicate, causing pain. “The more activity you do, the more viruses replicate.”
  • Tonsillectomies are very common in ME because the body is fighting off the viruses and causing chronic sore throats (my early teenage years).
  • Vaccinations commonly cause ME and relapses (I took every vaccination I could get my hands on because I thought they were protecting me and didn’t realise they’re not for everyone).
  • He suspects a brain stem issue because of vasovagal syncope history, neck problems and dysautonomia symptoms.
  • He said that he has seen cases of ME caused by invasive dental work alone, so he thinks my history predisposed me, but having acute bronchitis, viral gastroenteritis, lots of dental work and then the flu shot all in the space of 3 months definitively tipped my immune system to ME. He said, “The flu vaccination is what did you in.”
  • My tender abdomen he said was my terminal ilium and that was typical with enteroviruses living in the wall of the small intestine.
    He said I might have contracted new infectious illnesses in the past 3 years, but, whereas healthy people fight off viruses locally (i.e: facial symptoms with a cold), I fight it off systemically and all my ME symptoms flare. My mother and I heard loud and clear that contracting another virus would be incredibly dangerous for my recovery and my future health.
  • He said that there was a sewage leak into the lake at Incline Village in 1984, before the initial ME/CFS outbreak and that everyone got sick in the summer when they jumped in the lake. He said he is the only person in the US working on enterovirus research and he has found the virus in the blood and stomach lining of patients and has also done studies (injecting mice with enteroviruses and those that were initially immune deficient died). He said the CDC will soon be reproducing his work, he hopes.

Blood test results:

  • My T-lymphocytes are okay. CD4 is a little low.
  • Echoviruses, chlamydia pneumoniae, CMV, Creatine Kinase, IgA and CRP are all negative or within range.
  • Coxsackie B 4 and 5 are high. Type 4 is very high.
  • IgG (gammaglobulin) is low. All 4 subclasses. These are the most important antibodies to neutralise enteroviruses and maintain a healthy immune system.
  • HHV 6 IgG antibodies are very high.

Treatments:

  • He mentioned interferon, but said it is a very difficult treatment and short-lived.
  • He mentioned Epivir, an HIV drug that helps about 30% of the time, but didn’t want me to consider it now.
  • He told me to watch out for lakes, rivers, shellfish and not to drink the LA tap water.
  • He said I could try sublingual vitamin B12, coQ10, magnesium and vitamin D (all of which I take except B12).
  • The most important treatment he thought I needed was 5 – 15 grams of intravenous gammaglobulin to replace what I don’t have and modulate my immune system. He kept reiterating how much sicker I would be if I caught another virus, so he thought I should get IVIG twice a year and again whenever I travel anywhere (although, he said I probably shouldn’t travel). He wanted me to see an immunologist to get it, but it’s very expensive and the immunologist would want to inject me with a pneumonia vaccine to determine whether IVIG was necessary by my immune response two weeks later (I find this all very frustrating and wish that Dr. Chia could just give me a requisition form to take to a Seattle hospital so I don’t have to go through the rigmaroll of finding another specialist to determine that I need a treatment that this specialist says I need! It’s also frustrating because I won’t let a vaccine near me for the rest of my life and some random immunologist probably won’t take Dr. Chia’s word for it). If I can’t get IVIG, he said I should get 2 mililiters of intramuscular gammaglobulin, which will last for a few months.
  • He also gave me Equilibrant, his own proprietary blend of vitamins, minerals and herbs, and told us the story of his son’s recovery once he was taking 9 pills a day. He wants me to start on ¼ pill for a month, then move up to ½ for another month. I should expect an increase in my symptoms for 7-10 days. My problem with Equilibrant is that it has a bunch of fillers and crap in it: Dextrose, titanium dioxide, Yellow #5, Blue #2, Carnuba Wax etc. I still think I’ll try it, but I haven’t gotten the nerve up yet.

Honestly, the best thing he said to me during this whole appointment was, “You’ll get there.” He said since I’m so much better now than I was last year, my body is recovering and I just have to try to avoid getting another virus. After hearing Dr. Peterson say that he has never had a patient recover, it was nice to hear Dr. Chia say that I would get there…. I know “there” will not be where I was pre-ME, but I’ll take pretty much any there over here.